Myaware offering Aug. 9 online support meeting for LEMS patients

UK nonprofit hopes to connect people with rare disease

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by Mary Chapman |

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The U.K.-based myasthenia patient organization Myaware will host an online support meeting on Aug. 9 for individuals living with Lambert-Eaton myasthenic syndrome (LEMS).

The 1.5-hour Zoom meeting is specifically for members of Myaware, the only nonprofit in the U.K. representing people with myasthenia, a group of neuromuscular conditions that includes LEMS.

Its goal is to connect patients with the rare disorder — albeit virtually.

“Has it been a while since you spoke to anyone else who has Lambert Eaton Myasthenic Syndrome or LEMS, does it sometimes feel like no one else understands?” asks Myaware’s webpage announcing the meeting. “Would you like to have a chat with other members, ask those questions that have been bothering you, would it be nice to meet others, put voices to names and just have a chat… then our LEMS session is perfect for you!”

The virtual meeting starts at 12 p.m. in the U.K., or 7 a.m. EDT. The organization is encouraging participants to sign in by 11:45 a.m. to ensure a prompt start.

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Myaware is UK’s only nonprofit for LEMS

Prior to the meeting, adults who wish to join Myaware — it’s free — or renew their membership may do so. Registration is required for all participants.

Those interested in receiving more information about the meeting or becoming a Myaware member can call +44 01332949161 or send an email to [email protected].

LEMS has an estimated global prevalence of about 2.8 people per 1 million, with an estimated 150 patients in the U.K.

It’s characterized by muscle weakness that starts in the legs and renders walking and climbing stairs more difficult. As the disorder progresses, patients’ arms and shoulders also are affected, making everyday tasks increasingly challenging.

Other symptoms can include fatigue, diminished or nonexistent reflexes, double vision and eyelid drooping, anxiety and depression, and problems with speech, chewing, and swallowing. In severe cases, LEMS can cause weakness in muscles involved in breathing.

Most people with LEMS also experience problems in the autonomic nervous system, which is responsible for the control of several involuntary bodily functions, such as gastrointestinal movement, sex drive, and production of bodily fluids.

Myaware is dedicated to the care and support of people living with myasthenia, focusing on research, support, and awareness of these neuromuscular conditions.  The organization offers 24-hour peer support through its private social media groups, patient and family emotional support, and help navigating the U.K.’s benefits system.